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Heard from Carol (cbpgill26)

jimwins's picture
jimwins
Posts: 1982
Joined: Aug 2011

I got this from Carol this morning and am sharing as she asked.
Carol, thanks for the update and sorry you continue to have a rough time.
Hang in there and hopefully this will be over soon. I hope all of this
is successful and you won't have to go through radiation or further treatments.
We've been thinking about you too.

Hugs,

Jim

(Carol's Email):

Jim I see messages and can't read them. Post this for me please. I passed out after my third chemo the day after. I had 0 white blood cells. Took two booster shots to get it up even a little bit. We were all scared it was over. I was deathly ill no standing strength and even fell into a wall getting a big slash on my arm I am mainly limited to bathroom troops and real short walks. I am terrified of my fourth coming up the 3rd of July. OMG I pray when this is over they say gone it is. Or, I will be gone. I miss seeing all of you and nearly 60 is it? I am so confused and tired all the time. How are you and nearly 60? I am wondering when they say if radiation is necessary. I pray God not. Excuse my tardiness I care about all of you sooooooooooo much stay well. Lots of Prayers and Love cbpgill26

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Dear Carol,
I'm really sorry you're having such a difficult time with the chemo, like Jim said keep your eye on the prize (remission). Stay strong I will be praying for you, sending you hugs and positive thoughts.

Sincerely,
Liz

cbpgill26
Posts: 68
Joined: Mar 2012

Told Jim tough day tonight no sleep and restless. I will try to keep this short. Petscan results on 24 July will see what has been done. I pray the small mass in my eye is gone my main concern. If not trouble will follow and also 8 treatments instead of six. Let it be six!!!!!!! Low blood white cells put me down I tell you. I pray they catch it quicker next time. I know the symptoms now and will run there if I have to crawl running before I am due another blood test to check it. Love your picture. I am not computer savy and can't upload a darn thing. Maybe someone will come over that can that is young. 68 I am not too cool Ha. Ha. Did drink a glass of wine tonight not sure I was to have it but I did I celebrated getting through 9 hours of this stuff. Tomorrow Predisone for four days. Ugh. Witch of the West prevails then tho I try to watch it and realize what I am doing as my husband and son are so wonderful. How are you I would love to know. I am going to try and find your profile and see. Excuse mistakes gettin neropathyin my fingers and feet from this stuff had a little before but it is worse now. Finally anti'd up to the nurse now I have to see the doc. OMy what have I done. But probably better to be honest. Thank you for your comments. You are loved in Florida. God Bless.

allmost60's picture
allmost60
Posts: 3153
Joined: Jul 2010

Hi Carol,
I "wish" I was "nearly 60", but alas, I'll be 62 in September..ha! When I was first diagnosed in June 2010, I was 59...and obviously didn't give much thought when choosing my CSN screen name. From what I've been told, changing your screen name is a bigger deal than one would think. Anyways...I am fine, and sure wish you were doing better. I'm so sorry your blood counts are such a problem. I know Vinny sure went through hell with his blood counts during his chemo treatments. I was very fortunate during chemo and didn't require any shots or transfusions to boost my counts. I'll be thinking of you on the 3rd and sending positive thoughts and prayers your way. After this round you should be past the half way mark, depending on if you get 6 or 8 rounds. I have not had to do any radiation, so don't know anything to help you there. Try to remember to ask your doctor on the 3rd when you go in for your 4th round. Write yourself a "BIG" note and put it by your purse. Hang in there Carol...Much love...Sue
(FNHL-2-3a-6/10)

cbpgill26
Posts: 68
Joined: Mar 2012

Well-----------close enough 60 a babe in the woods and I bet lovely too. Yep only if my granddaughter comes this Aug. will I change this if she can figure the picture out. I have tried everything and my old cronies know nothing. Today was long and tears fell about four pm I wanted out. 8 hrs. of it. I DID WHAT YOU SAID I WROTE A HUGE NOTE ON THE COMPUTER. PETSCAN RESULTS WILL BE THERE ON THE 24JULY THE DAY OF MY 5TH TREATMENT AND HE WILL THEN KNOW SIX OR EIGHT. I DIDN'T ASK HIM WHAT HE THOUGHT AS I JUST DIDN'T WANT TO KNOW THAT TODAY. It was great advice. Thank you so much. I am glad you had no radiation. I would have to get it in the neck an corner of my eye and they say lots of hurt, eating a problem and 17 of them of which none can be given here. WE have no power point rays to beam to one small area like the eye. He did say I could go to University of Alabama not MD Anderson that I hated when I went for biopsy re-check etc. HATED IT MEAT MARKET AND SO MUCH SADNESS BUT WONDERFUL PATIENTS I TELL YOU JUST TO FAR FROM US AND SO EXPENSIVE FOR MOTELS ETC. UAB IS 4 HOURS AWAY AND LOVELY. SORRY ABOUT VINNY'S WHITE COUNT. I TELL YOU THIS TIME I KNOW THE VIOLENT DIZZY AND WILL REMEMBER THE WEAKNESS AND COULD FEEL MYSELF FADING AWAY. THE DOC. SAID IT SERIOUS. HE SCARED US AND SAID WE HAD TO GET IT UP. GOT SEVERAL BOOSTERS BUT I TELL YOU IF IT HAPPENS THIS TIME AND I FEEL ONE SYMPTOM I WILL NOT WAIT FOR MY ROUTINE BLOOD TEST I WILL RUN TO THEIR OFFICE. How can I thank you and my three friends who stick with me through my whining. I feel I am graced by God to have perfect strangers care and they really CARE. You are special thank you sooooooooooooooooo much. Excuse when I post wrong or type crazy. Experiencing neuropathy in my feet and finger tips. Had it in my feet but now worse never the finger tips but it is causing grief with my finding the keys. So bear with me. I came clean and told the nurse today. She said it could be a problem and meds. may need to be adjusted and Doc. needed to know.Boy I never get out easy wishing I kept my mouth shut. Ha. Ha. Oh, did drink a glass of wine tonight my first in 5 months. I needed a treat. Hell if it killed me at least I toasted my own self. Ha Ha. Prayers you way and lots of love. Carol

jimwins's picture
jimwins
Posts: 1982
Joined: Aug 2011

Hi Carol and thanks so much for posting. I read your email and you
pretty much covered the same things here.

I do recall you told me the mass at/in your eye has shrunk considerably and
the one (in you neck) has shrunk also but still detectable. This is good news
as it means you are responding to treatment! I know it's a rough road but
you will get through this!

I'm glad you got to enjoy some wine and be a little "normal" for a bit.
Prednisone makes us all "wicked witches". I kept looking up for that
proverbial house to land on me - LOL.

Tell your husband "Happy Bithday" when it comes up on the 24th!
You're doing fine and we're all proud of you here, Carol.

Hugs,

Jim

allmost60's picture
allmost60
Posts: 3153
Joined: Jul 2010

Hi Carol,
I remember back, I think it was my 3rd round of chemo, when one night I decided to fix myself a "red beer". If you don't know what that is, it's just beer with tomato juice. Anyways...after drinking it, I felt so much better by just saying "to heck with it" and doing something different to take the edge off. I felt a little bit tipsy, but it sure relaxed me which was much needed after doing 5 days of the nasty prednisone. I never was a big drinker, but I do like a nice cold beer once in awhile. As Jim said, with shrinking of your tumors and the mass in your eye, thats a sign the chemo is working, and thats "GREAT"! My tumors had shrunk 40% in size by my 3rd round of chemo. Try to just take it one day at a time and focus on the end prize. None of this is easy, but in time it will get easier. You hang in there and remember we are "always" here for you. Check in when possible, and my prayers and positive thoughts are with you. Much love...Sue
(FNHL-stage3-grade2-typeA-Dx 6/10-considered stable)

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